By day, Zach Tremblay is your typical 16-year-old.
He is a Grade 11 student at Stanley Humphries Secondary School in Castlegar, B.C., just across the Columbia River from his family’s home in Robson in the West Kootenays. He plays basketball and likes to bowl. He spends time skateboarding, and hanging with buddies.
By night, however, Zach is anything but typical.
As he gets ready for bed every night — every single night . . . EVERY SINGLE NIGHT . . .
there aren’t any nights off — he hooks up to a machine called a ‘cycler’ that, while he is sleeping, uses fluids to drain toxins from his body. For most of us, our kidneys take care of these toxins.
However, Zach was diagnosed with chronic kidney disease at birth. While he was younger, medications helped control things. As he grew older, the medications weren’t enough. He now has been doing peritoneal dialysis (PD) for almost five years.
There was a brief interruption in the middle of 2017 when he underwent a live donor transplant at B.C. Children’s Hospital in Vancouver.
But, as his mother, Jana, wrote, “Unfortunately it did not work out, and was removed 24 hours and four surgeries later. An absolutely heartbreaking moment for all of us, but mostly him.”
On Sunday, Jana told me that “because of the donor tissue being inside him, he has developed very high antibodies, so finding his match has proven to be a huge challenge.”
After the transplant didn’t work out, it was back home. Back on PD. Back waiting and hoping for a live donor to be found.
In September 2017, about three months after the transplant had failed, Jana took to her Facebook page in an attempt to add some momentum to the search.
“Zachary Tremblay is a 14-year-old boy from Robson, B.C., Canada,” she wrote. “He was born with CKD, Hypoplasia-Dysplasia with reflux. After 12 long years of battle, he has been put on PD and is awaiting a kidney transplant. Zachary is an O negative, but the donor can be O, O- or O+– The RH Factor is irrelevant, and can be controlled by meds.
Each family member has been tested with no matches. We are now reaching out to you, the public, our friends, families, neighbours and strangers. Our boy needs a kidney, and every kid deserves a chance at a healthy life. Please consider being tested for him.”
Four months ago, Jana updated the situation for the first time in six months:
“Six long months have passed since our last update. Six more long months of dialysis, meds, appts, lab draws, injections, supply orders and dump runs ( medical waste builds up SO fast!)
“We are still sharing, waiting, hoping and praying our boy gets his gift. We will never give up on that! In the meantime, we promote organ donation and ensure people who want to be are signed up.”
Last summer, Jana was asked to address the gathering at the annual Kidney Walk in Trail, B.C. Her father was ill, so she wasn’t able to make it, but she put together an emotional piece that was read to the crowd that day. More than anything, this spells out the impact that kidney disease has on a family. Some excerpts follow . . .
Shortly after birth, doctors discovered that Zach “was in complete renal failure and would need immediate intervention at B.C. Children’s Hospital if he was to have any chance at survival. . . .
“Zach, myself and his Dad spent the next six weeks in hospital. We slept side-by-side on an old metal cot beside his crib, in the corner of his room, so we could be there no matter what happened.
“He had very high potassium, and they were worried his heart would be damaged or, worse, would just stop.
“Many long nights, painful tests, blood draws, treatments, ultra sounds, and IV’s later, our baby was stable, and we were able to bring him home. I remember excitedly asking our doctor, ‘What now? What do we do now? What will happen to him and where do we go from here.’ His response shook me to my core. He very quietly and calmly said: ‘Take him home and enjoy him, because this baby is not going to live.’ . . .
“Not only did our son survive, he surpassed any expectation they had for him. He grew and thrived and required very little intervention, aside from vitamins and phosphate binders, until his 11th year.
“In September 2012, he went into sudden decline, and by December he required surgery to place a peritoneal dialysis catheter (into his peritoneal cavity). After the holidays and some healing, we spent the next two weeks training in Vancouver to learn to give our son dialysis at home. We had to learn to look after our son, and give him his therapy, distribute his meds, care for his site, and watch for signs of issues or infection. . . .
“We have spent the past 15 years traveling back and forth to Vancouver. While people were setting money aside for their next family holiday or big vacation, we were saving for our next trip to Vancouver. . . .
“This disease affects the whole family. My other son, Mason, has spent a good deal of his life, also going back and forth, attending appointments and supporting his brother. He has been afraid, lonely, scared and angry. . . .
“There are few people in this world I look up to more than my kids. Zach has endured more than any kid should have to. He has handled it with a maturity and grace not seen in most his age. While most kids are worrying about homework, social media, friends, etc., he has all that, plus the added pressure of this disease. He has to remember to take meds. He has to take his BP everyday. He has worries, fears and responsibilities most adults couldn’t adhere to. He shouldn’t have to.”
The Tremblay family, including Jana and her husband, Dan, live in Robson. There is an older brother, Taylor, and an older sister, Kailie, both of whom have partners and children. There are other family members in the area and in the Okanagan; the support system, Jana said, is strong.
The family has learned to take life one day at a time as they wait. Hoping. Praying. Zach hooks up to his cycler EVERY SINGLE NIGHT as he, too, plays a waiting game.
On Thursday, Jana posted a brief message on Facebook. It read: “Thursday seems like a great day to find a kidney!”
I’m thinking that the Tuesday after a Thanksgiving weekend would be a great day to find a kidney, too.
If you are interested in more contact information, here you go:
Living Kidney Donor Program
St. Paul’s Hospital
6A Providence Building
1081 Burrard Street
Vancouver, BC V6Z 1Y6
Toll free: 1-877-922-9822